My Journey Through Surgery

I met Tim like most other CMT'ers I've met - through the amazing world of the internet. Tim's story is actually very similar to mine, we're the same age, both have CMT Type 1A and he is getting ready to have his reconstructive foot surgery this week. He asked me to write an entry for his blog, which you can see below or by clicking here.

You can also check out his blog here: CMT creates: music. Good luck with your surgery Tim!!
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A year ago I set out on a journey, one that would be long and painful but one that should be very rewarding once I reached my destination. I am 29 years old and was diagnosed with CMT Type 1A in 2005. At that time, I met with a surgeon who could correct my insanely high arches, but there was a glitch...I wasn't ready! I wasn't even ready yet to know what CMT was. So I pushed it in a drawer and went on with my life. As time passed, my arches got even higher (my shoe sizes went from a size 6.5 to a 3!!) and the calluses in the balls of both my feet were worse. I had to go to the doctor on a monthly basis to have them shaved off and even then, I still hurt with every step I took. I also developed this terrible pressure pain on both thighs, my ability to walk or stand for long periods of time decreased, and I had no choice but to pull CMT out of that drawer and find the time to deal with it.

I did everything I could possibly do before having reconstructive surgery: physical therapy, acupuncture, several pairs of orthotics, expensive shoes, you name it. Life sometimes has a way of working itself out and I was moving to CT from NJ and had to quit my job. Since the job market isn't all that great and I didn't see any interesting jobs in my field (Marketing), I thought it would be a perfect opportunity to take time off and invest on my health by having two reconstructive surgeries, one on each foot.

I started my search for surgeons again around November 2009 and when I finally selected the best surgeon at the end of the year, he announced to me in January that he was retiring. I was frustrated and annoyed with him, but he promised that he would find me a great surgeon and that he would be there during both surgeries (and he kept his promise!). In February 2010, I met with Dr. Feldman, whom I immediately liked. He thought it would be a good idea to try an injection into my hips to see if it would help my thigh pain. Unfortunately the doctor that administered the injection hit a nerve and I was in so much pain that we couldn't go through with my March 17 surgery.

Finally on April 16, we were all set. No more delays. I had never been hospitalized or had any procedures done, so I was a bit anxious about diving into this unknown. On that day however, I was pretty calm. For me, the hardest part was making the decision. Once the decision was made, I was ready to go. I also prepared myself for the worst case scenario. I talked to several CMT patients who had undergone this surgery before me. I was ready for a year or longer in recovery. And most importantly, I was ready for the pain. The first night was extremely painful and difficult, there were a lot of tears. But I prepared for this journey with the support of family, friends, and loved ones, so I was not alone. Even though I live with my boyfriend, I prepared to spend about 2 months with my parents each time because they would be able to be with me almost all of the time. Believe it or not, time went a lot faster than I expected. Before I knew it, I could move again and I could start to step down with the walking boot. I returned home and started physical therapy. Within 3 months, my foot was no longer swollen (I mean, AT ALL). And almost immediately I could tell the difference between this new foot and the old foot, and was sure I had made the right decision.

Then, I started preparing myself for surgery #2, but this time, I felt more confident because I knew what to expect and the first surgery went so well. I knew what my timetable would be, how my body would react to the meds, I knew that even when time seemed to drag, that it would all fly by and I would be back to walking again. So we scheduled it for September 20. And just out of nowhere, 2 weeks before the big day, my surgeon's office called to move it to September 22, which wasn't a big deal but was kind of annoying. I point this out because life works in "mysterious" ways. One of the main things I have had with me through the process is faith - that everything would be ok. Six days before my surgery a recruiter reached out to me with a perfect job opportunity. And wouldn't you know that I interviewed on September 20 and 21, and actually landed the job!!!! They decided to wait for me for 2 and a half months while I recover!!! If this isn't a gift from above, I don't know what is.

Getting the job just made me want to get the process over with even more quickly. The first time around, I knew I would still go through a second surgery so I was pretty calm. But now that I have something to look forward to, I have been anxious for time to pass. It's now been 2 months since my second surgery and I've been moving around with the walking boot, soon I'll just be walking on my own.

I can't believe this year has gone by so quickly. I think it definitely has been my most trying year, by far. But as I get close to that finish line, I feel a sense of accomplishment. I really did what I set out to do. I feel that I am coming full circle. I won't say it's been an easy and rosy journey, it's been full of tears and many times over the summer, resentment that I could not go outside to enjoy my favorite season. But I'm almost done and I have learned so many lessons in life! Hopefully my new feet will be happier than my last ones and healthy for a long time to come!

Week 2: So far so good!

Time flies...I can't believe it has already been 2 weeks since my surgery. Since I've been home, I've only been outside once, last Saturday when it was nice and sunny out. But it was such a hassle to get me and the wheelchair outside that I haven't really bothered to go back. I guess the fact that I am a homebody comes in really handy right now...I definitely don't have cabin fever yet, I'm actually still enjoying myself (knock on wood this lasts). I'm staying in my parents' room where I get to see the backyard, an apple tree (and the blue bird that visits it everyday), and most importantly, sunlight. This may be a huge reason as to why I don't feel so caged in.

It's also been pretty busy for me that I haven't really looked at the pile of gossip magazines in the corner, or read my books, or watched the DVD's I made sure to have, or listen to the CD's many friends have given me. Most of my time consists of emailing or talking on the phone with my sisters in Brazil (which happens to be very entertaining) or hanging out, emailing and talking to friends and family who come to visit me. The house is constantly decorated with beautiful flowers I've received, which I am so grateful for.

There are definitely a few things that I have had to get used to, like sleeping on my back, which I have never been able to do until now, or what a process showering has become (I can't just walk in and do it on my own). I also need to get used to keeping my foot up at all times...before the surgery, I would never do that because I would always feel numbness on my left foot and that is something that is still bothering me a lot now. At least before I could try stretching my foot or my toes, now I can only adjust the pillows I rest my foot on or let my foot drop for a couple of minutes.

The itching all over my body that I started to feel in the hospital is still bothering me. So much so that my mom started to give me water with vinegar and sugar (an old recipe from when she was a kid) to help and I've started to feel better. Right now, the thing that is definitely the most uncomfortable (TMI ALERT) is just how hard it is to regulate my stomach. The medication I am on is so strong that it "blocks" me so I have to take Milk of Magnesia and eat lots of fiber to "release" me...anyway, making a long story short, it's just hard to find a balance.

The nurse and physical therapist were back this week and I was assigned my first set of homework that I need to do twice a day. While the therapy seems pretty simple, it's crazy how tired I can get from so little exercise.Thankfully, the pain is still under control with taking the meds every 6 hours. I have felt some annoying tingling sensation on the back of my foot, the part that rests on the pillow.

I am truly fortunate to have my parents who help me so much and are doing everything for me. I don't even know how I would be able to go through with this process without their help. As thankful as I am, I also miss my home and most importantly, I miss being with John. We dated long distance for 4 years before we moved in and now we're kind of back to that again. I know it's only temporary but I just wish CT and NJ were closer.